I'm new - 10 yr. old son suffering with epilepsy - Mom just suffering

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New Member

Date Joined Feb 2006
Total Posts : 2
   Posted 2/18/2006 3:38 AM (GMT -6)   
Hello. Thank you for the opportunity to post here.
I am not sure how short I am supposed to keep these posts but just to give you a brief snyopsis of my son:
Joe is very bright. Above average. Incredible athlete. 10 years old. Strong willed yet sweet as the day is long.
Joseph has been diagnosed with absence seizures. According to his latest EEG they have now progressed into a more generalized form of epilepsy. Our doctor admitted he would not be at all surprised if Joe started having grand mals. After I got over the feeling like I was kicked in the gut I asked what the plan of attack would be. Currently on Zarontin 750mg twice daily. Added Depakote along with that and it was a nightmare. Taken off depakote and now have added Lamictal. Seems to really be affecting his mood/behavior. Almost manic at times. Seizures are more frequent and very disoriented when he comes to. So a couple of questions I hope someone can shed some light on?
1. Does anybody have any experience with Lamictal?
2. Joe had an episode and when he came to he could not talk??? Normal??? (whatever normal is these days) He would only shake his head yes and no.
3. Does anybody have any experience with Zarontin?
4. Advice coping with his mood/behaviour changes? Mainly anger.
5. Any advice for a mother of 4 trying to hold the family together while we get my sweet boy back on track?
I am currently looking for support groups in my area.(Annapolis, MD)  We see a GREAT doctor at The Johns Hopkins Pediatric Epilepsy Center but am hoping that someone out there can lead me in the right direction! Thank you all!

Regular Member

Date Joined Feb 2006
Total Posts : 84
   Posted 2/18/2006 12:56 PM (GMT -6)   
HI: I am adult 50 yrs old, the Dr never should have mixed zarontion with depkote. Thats a wrong mix. I had a Dr who once did that and it made me so sick I was 20 yrs old. We switched Drs and learned that.
As for the lamictol and zarontion I am not sure. You can also ask your pharmacist. Some pharmacies have books for patients to look up their meds and you can photcopy it.

I got epilepsy at 11 yrs old, my first year was tough I had a tutor. After that my life adjusted and my my Dr didn't let my mother baby me. I worked,babysat, traveled. I had absense and grand mal szs.They were controlled by my meds.Usually I would have a grand mal and it meant I needed a med change which happened every 5-7 yrs.

Attitude is everything with epilepsy,if you don't think he is a seocnd class citzen , he won't think it. He is as good as the next person. What you want and need is a Dr who knows how to mix meds and and get him stablized. If you need a support group call the efa and see if there is one in your area. If not we are all here for you, you will have our life experiences . Plus our shoulders to lean on.

Answers to ques:
After a sz answering is diffifult, it takes awhile so my husband says.
I took zarontion for 10 yrs , what are your ques?
I took lamictol for a short time, didn't have problems with mood got rash, watch for dry skin and rash, use cetaphil soap while using lamictol.

I do not have children, all I can say is be supportive and understanding, realize this is the med talking not him. He might need a change of med again. Does the Dr know he is acting aggressive?

Best wishes
Positive Person
Reason for edit: I had to remove the link as it is classed as advertising. Rule #4 No advertising or links to advertising or "Spam" is permited (including signatures). In this case it is the promotion of a forum.

Post Edited By Moderator (djdaz_1985) : 4/25/2007 6:56:48 AM (GMT-6)

Beth B. in TN
Regular Member

Date Joined Oct 2005
Total Posts : 83
   Posted 2/18/2006 10:23 PM (GMT -6)   
Hello There!
Hi, from a fellow mom. My 15 year old daughter has mostly complex partail seizures with some generalized and some simples. From my experience with her, Not being able to speak for quite some time after some seizures is normal for her. It really "freaked" her out at first (me too). Her neuro said it was quite common to have that "reaction" from a seizure.
We're still playing with medications ourselves (I've got Kimmy an appointment with a different nuero for a second opinion.) Playing with meds to find the right one is hard on everyone from what I understand. I know it is hard on Kimmy. Know that we are here for you. Kimmy is on Keppra and Trileptal and lexapro for anxiety (although, I've had quite a few people tell me that is rare for someone to be put on that has seizures) The people here are great, caring, and informative. I have no medical advice just prayers and support. I just have 2 kids left at home and I feel like I'm neglecting the other one sometimes (unintentionally) I know you can do it though. I've been through lots of things in life. You can be strong. Keep us informed, sounds like your doing a great job. Wow, to have John's Hopkins at my disposal.
Beth B. in TN

New Member

Date Joined Apr 2007
Total Posts : 3
   Posted 4/24/2007 6:31 PM (GMT -6)   
Hi Joe's Mom!
Wow! Your son sound so much like mine. I have a 10 year old also. He started having seizures at 4. It takes him a long time to talk following his seizures also. Currently, he is taking Zonegran. Since he's been taking medication since he was 4 I really have a hard time with what his side effects are. I mean, he can't really tell me. It's like I don't know if the meds have changed his personality. This is my first time online and I look forward to spending more time here. Sometimes I feel the doctors aren't really helpful. I don't know. I have so many questions and never the answers that ease my mind. But, my son is an above average student and really involved in sports etc. also. So, maybe we can exchange notes. I am now concerned with him being so hyper after he sleeps off his seizure. Have you seen this?
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